Wednesday, June 11, 2014
Love life. Engage in it. Give it all you've got. Love it with a passion because life truly does give back, many times over, what you put into it.
Maya Angelou (1928 - 2014)
This post has taken a few weeks to write, not because of my health/energy levels, but because it is hard to type with a lump in your throat, eyes full of tears, and when your words feel inadequate.
Twenty five years ago after Meeting in Glasgow Meeting House I met a cute little 10yr old who was incredibly cheeky. I was there as a Young Friend helping with the catering at an NFPB event over the weekend, he was there with his Dad. Recognising the London school on his sweatshirt I innocently asked 'Do you know the Gibsons?' Hervey replied with a laugh 'We are the Gibsons!' I can't quite remember Anders' exact response but it was along the lines of him being the most important one, and the fact that I knew his older brothers Kester and Stefan would pale into insignificance having now met him! It seemed quite funny at the time, but no disrespect to them, it proved to be more prophetic than I'd ever have imagined possible.
Much to Anders' disgruntlement time put paid to him being 'cute' and 'little' but he never lost his gift for cheek and his ability to find the humour in life, often at someone else's expense when not at his own, and somehow he usually got away with it.
The early 2000s saw me traipsing through to Glasgow from Edinburgh for a series of training courses as I tried to get to grips with Sage and advanced use of Excel. The bonus of which was catching up with assorted f/Friends through there more often than usual, including Anders. It was the first time we'd really spent much time together not at a Quaker event or planning one, and despite having known him for over a decade by then it was probably the first time I'd had any lengthy in-depth conversations with him about his Cystic Fybrosis and assorted side effect conditions. I'd picked up quite a bit over the years, you couldn't know him and not do. He was far from afraid to talk about it and would take great delight in giving somewhat graphic explanations at mealtimes about feeding tubes and and sputum if only to see how many people he could put off their food. His party trick for several years as a pre/young teen was sticking the entire length of his little fingers up his nostrils to prove he could, well what can I say, there's something about finding humour in bodily functions that must come with the Y chromosome, and he had a double dose...
Anders had often reminded us he was living at the cutting edge of medical science; even by his teens he'd already well exceded his original life expectancy and we all knew it was a case of hoping that science would progress faster than his lungs deteriorated so he'd have decent chance. It was one thing intellectually knowing he was on more tablets a day than most folk his age would take in a year, but seeing all the boxes, jars and packets lined up in his flat along with the oxygen machine and protein drinks made it really sink in for me. At the time Anders was campaigning for all the medicines needed by those with CF to be free as only a fraction were - those for associated conditions such as osteoporosis, kidney problems, diabetes etc were still charged for and these could mount up to a hefty sum which the Disability allowances weren't really geared up to covering. Although I'd left the country by the time it happened I gave a whoop for Anders and co when I heard all prescriptions would be free for everyone.
I can still remember one particular conversation as if it were last month, rather than over a decade ago, when I first realised the future option of a lung transplant was a possibility for him. He reckoned that one could give him a life expectancy of late 50s - mid 60s, which, as he pointed out, wasn't bad for a Glaswegian! However of course there was always the possibility that a transplant could fail, or him not even survive the operation. It was a risk, but one he was prepared to take. He figured that by the time one would be available to him the chances were he'd not have long left anyway so it was far better to die trying. It was all so hypothetical at the time, and there was something slightly surreal about even having the conversation. Apart from prompting me to get a new Organ Donor Card as my old one had so many changes of contact information crossed out on it that it was almost illegible, there didn't seem much else to do at the time, but it certainly gave me a renewed admiration for his pragmatic and philosophical approach to life and death. Oh and it also meant I was slightly more anxious each time he landed in hospital, he just had to live long enough to get that 'second chance', he just had to....
In more recent years Anders became a regular in the Scottish media giving interviews about the Cystic Fybrosis Trust, The Butterfly Trust, and Live Life Then Give Life amongst other things. The great advantage of the internet meant I still got to read print articles even though I was half a world away, although internet broadcasting restrictions meant I missed the radio interviews. Being Anders he not only got heavily involved himself but got a whole heap of his friends on board, whether playing in the fundraising football tournaments he organised, inspiring them to do crazy (as far as I am concerned!) fundraising events of their own, or simply getting a large number of people sharing links to the NHS Donor Registry on Facebook. The 'Anders Effect' as it became known by some of us had become evident back at Northern Friends Summer School in his teens where his frank openness and sometimes blunt way of putting things got a lot of people to really think about issues around medical testing, disability awareness etc. Telling someone to their face that you'd be dead if it wasn't for experiments on animals when they've just been trying to convince a room full of +60 teenagers and 20 adults it was a bad idea certainly makes an impact! Not only has he led to people running races etc because of him, he's immeasurably shaped the lives and thinking of so many people.
In April last year Anders made it to the lung transplant waiting list. It was good news and bad, great that he'd get a chance, but you have to be in pretty bad shape to make it to the list. It took over a year, and several false alarms that saw him rushing down to the Freeman Hospital in Newcastle-upon-Tyne only to find that the op couldn't happen. Either his health wasn't good enough (ironic really, you have to be pretty bad to get on the list then you have to be healthy enough to have the op), or someone else got the lungs. The journeys between Glasgow and Newcastle themselves didn't help his health and with one lung collapsed and the remaining one at 35% functionality it really was becoming a race against time. Then finally it was his turn, if the number of Facebook likes and messages of support could dictate a medical outcome he'd have been jogging straight from the operating theatre out on to the football pitch (probably still in his theatre gown for the laugh of it!). However after a few all too short days it became evident that the lungs hadn't taken, and after 7 weeks in intensive care the refs whistle blew, it was game over.
As well as getting to know most of his family fairly well at one point or another over the years, Anders was part of a crowd of Quaker teenagers I'd looked after, and in time worked with, at various events who became very dear friends. They have supported me through some pretty lousy times of my life. I've watched that crowd grow up, grow together, and support each other through thick and thin. Not being able to be there for them now hurts about as much as losing Anders does. But I am oh so incredibly grateful to know they are grieving as adults in their 30s, and not as a bunch of teenagers. As one Summer Schooler put it on Facebook 'You kept telling me this day would come, but I didn't want to believe it.' None of us wanted to believe it, and kept hoping for that miracle, yet Anders would be the first to tell us that he got the miracle, he got 30yrs over the odds which isn't bad really.
As this article from the Evening Times shows, Anders inspired to the end. The pages and pages of tributes that poured in to Facebook, those who showed up to his Memorial Meeting, not to mention all those who would've if they could, speaks volumes about a a life well lived. Oscar Wilde said 'One has a right to judge a man by the effect he has over his friends', and the Anders Effect I'm sure will be with us for many, many more years to come as we do our best to dance for one more of us.